A Guide to LGBT Caregiving
Caregiving is often challenging. Those who provide or manage
the care of someone with a serious or chronic illness may feel
emotional distress and physical strain. Caregivers can experience
financial difficulties and find it hard or frustrating to coordinate
care. Caregiving also offers many rewards. These rewards include
the affirmation of love and respect between the caregiver and
person being cared for.


This guide has been
prepared by the United
Hospital Fund’s Next Step
in Care campaign, in
collaboration with
Services and Advocacy for
GLBT Elders (SAGE) and
the SAGECAP (Caring and
Preparing) program.

www.nextstepincare.org

People who are lesbian, gay, bisexual, or transgender (LGBT)—
whether they are caregivers or the ones in need of care (and,
often, both are LGBT)—may encounter special challenges. This
guide looks at some of those challenges, including a change in
care setting, such as an admission to a hospital followed by a
discharge to home or a nursing home rehab program.
In this guide, the term “family caregivers” refers to all people who
provide or manage the care of someone who is chronically or
seriously ill. Family caregivers may be part of the patient’s family
of origin or family of choice. For this reason, this guide may refer
to the person you are caring for as your “family member.”


Sometimes one caregiver
is caring for a partner, an
LGBT friend, and a parent
at the same time.

About one in five adult Americans (as well as many teens and
even children) is involved in caregiving. As a group, LGBT
individuals are particularly likely to be caregivers. This is because
many are single and/or childless. Their families of origin may see
them (or they may see themselves) as someone most available to
care for older family members. Many have formed close
attachments to others in the LGBT community. They understand
the need of individuals who are aging or ill for emotional and
practical support from familiar people.

Special History of Caregiving in the LGBT
Population
In the early years of the HIV/AIDS epidemic, gay men and lesbians
were the main, and sometimes only, caregivers for their friends
and loved ones. This experience made a deep impact on the
generation that lived through it and may now need care. Some
may remember the stigma and fear. Others may focus on the
community taking care of their own.
Having experienced rejection and disrespect in health care
settings, many older LGBT individuals avoid seeing a health care
provider until a serious problem arises. Others have found a
primary care provider who is comfortable with LGBT patients.
These LGBT-friendly health care professionals may not be
available when your family member has a medical emergency or
is admitted to a hospital or nursing home. Problems can also arise
when your family member needs health care services at home.

Emergency Rooms (ERs) and Hospitals
All caregivers should have the same rights, responsibilities, and
obligations, but some LGBT caregivers report problems in
carrying out this role. It is often not possible to select health care
providers who are LGBT-friendly – especially when your family
member goes to an Emergency Room (ER) or hospital. If the
hospital admission is planned, you may be able to select a

hospital (within insurance and geographic realities). Do not select
a hospital based only on what you hear from others. While one
person may have had a good experience in a certain hospital,
another might not. So much depends on the many physicians,
nurses, and social workers you meet along the way.
Your family member’s primary care doctor may not be the one
directing care in the hospital. That role has been increasingly
taken over by “hospitalists” – doctors who are trained in critical
care, see patients only in the hospital, and are available at all
times of the day and night. But hospitalists do not have
continuing relationships with patients. In fact, you may not even
see the same hospitalist each day.
It is important for hospitalists to communicate with the patient’s
primary care doctor. To encourage this, tell the primary care
doctor that your family member has been hospitalized and ask
that he or she talk with the hospitalist in charge. This
communication can help prevent errors (about medication or
other medical issues) and aid in discharge planning. It also can be
reassuring to know that your family member’s trusted physician is
actively involved in his or her care.

It is always a challenge to navigate an unfamiliar environment,
whether that is the ER, hospital or other care setting. It helps to
prepare ahead of time. One important way is by getting the
necessary legal documents in order. The rights of LGBT
individuals to participate in decision making and even visiting the
patient in the hospital may be challenged by families of origin or
ignored by staff. There is no absolute guarantee against an
incident occurring, but there are some ways to make it less likely
and to seek recourse if it does.
State laws govern who is able to make health care decisions for
patients who cannot do so for themselves. State laws also govern
the type of evidence that is required. If you and the person you
are caring for live near a state’s border or spend a lot of time in
another state, it is essential that you have documents establishing
you as the responsible person in both states. Being legally
married or in a civil union or domestic partnership in one state
does not guarantee recognition of this status in another state.

Below is a listing of important health care documents. Make sure that these documents are
up-to-date and easy to locate. These documents are useless if they are stored in a lawyer’s
office or safe deposit box.

Legal Document Checklist
Document
Advance
directive

Purpose
Defines person’s wishes for care,
especially at end of life; includes
health care
proxy and living will

Health care
proxy

Names someone to make health care
decisions if person is unable to do so
because of loss of capacity
(temporary or permanent)

Living will

A type of advance directive that gives
personal wishes about
types of care

Financial power
of attorney

Gives another person power to
manage money; this power can be
comprehensive or limited

Hospital
visitation
directive

Lists people who are allowed (and
not allowed) to visit

HIPAA release

Gives a hospital or other provider
permission to share
patient’s medical information with a
caregiver or other person (not legally
necessary but hospital rules may
require it)

Date signed

Location

If you go to the ER or hospital, take these documents with you along with the patient’s
insurance information and current medication list. See the Next Step in Care Family Caregiver
Guide to Emergency Rooms http://www.nextstepincare.org/Caregiver_Home/ER_Visits/ for
more information.

Other legal documents that may become important include a will
(for personal assets), funeral directives (especially if you or your
family member anticipate disagreements, for example, with the
family of origin), and beneficiaries for life insurance or other assets
not included in a will. This list is only a starting point. It is best to
consult an attorney familiar with LGBT concerns and state laws to
make sure that these documents are appropriately written.

Medical Directives
In addition to legal documents, you may need medical directives
(orders) signed by a doctor. For example, if your family member is
being cared for at home and does not want certain emergency
procedures (such as CPR or a breathing tube), you will need an
out-of-hospital (or community) DNR (Do Not Resuscitate) order or
a Do Not Intubate (DNI) order signed by a doctor. These vary by
state.
If your family member is about to be transferred from a hospital to
another setting, the hospitalist may ask him or her (and you as the
health care proxy) to sign a Physician Orders for Life-Sustaining
Treatment (POLST). The goal of this document is to make it more
likely that an advance directive is honored. But you have to be
sure that all the factors have been considered before you or your
family member sign the order. For example, when checking “no
antibiotics,” does your family member mean “no antibiotics under
any circumstances” or “no antibiotics that are intended only to
prolong life, not relieve pain”? Or does “no mechanical breathing
tube” mean “never” or would your family member be willing to try
the machine for a defined time? Be sure that a health care
professional answers all your questions before you sign.


While health care staff
may not be hostile to
LGBT patients or
caregivers, they might not
even consider or
understand that the
patient and/or
accompanying person are
LGBT.

www.nextstepincare.org

Identifying Yourself
Anyone accompanying a patient to an ER or admission to a
hospital or nursing home rehab program will be asked, often
many times: “And who are you?” Or perhaps the question will be
phrased not so much as a question but as a confirmation: “And
you’re the patient’s daughter?” Many hospital staff members still
think in terms of poorly defined categories like “immediate
family,” which may include various relatives, and “next of kin,”
which is a legal term identifying relatives of deceased persons.


Some caregivers want to
avoid secrecy about their
LGBT identity or
relationship. Others prefer
to keep this information
private. And some choose
the path of least resistance
and go along with any
misunderstanding.

You have a choice in such a situation. If you are caring for a
parent, sibling, or other member of your family of origin, then just
say so. If you are caring for a partner, or LGBT friend, you can
choose to accept the designation assigned to you (“Yes, I’m her
sister”) or correct the misunderstanding. Some LGBT caregivers
want to clear the air and avoid secrecy. Others prefer to keep this
information private. And some choose the path of least resistance
and go along with the misunderstanding. But keeping this
information private may be emotionally uncomfortable and lead
to other issues later on. A lot depends on the feelings of the
person being cared for. Based on years of being closeted, older
LGBT people may be particularly concerned about disclosures and
stigma.
You may worry that being explicit about your identity or your
relationship will result in your family member being harassed or
getting inadequate care, even though that should not happen.
Unfortunately, poor care (such as failure to keep the patient clean
or assist in feeding) can have many causes, and you have to be
alert to this no matter what you decide about identifying yourself.
The best defense against poor care is your own vigilance. This
includes being present in the hospital or other care setting,
establishing yourself as the person most responsible for the
patient at home, and identifying the most cooperative staff
members. While you cannot always be present, it helps to visit
during different shifts, call in, and ask informed questions.
There is a difference between poor care and disrespectful care:
 Poor care is unacceptable as it affects the patient’s physical
well-being.
 Disrespectful care, such as hostile remarks or anti-gay joking, is
unacceptable because it diminishes the patient’s dignity.
Disrespectful care is not limited to LGBT individuals. Members of
minority groups, people with dementia or mental illness, people
who do not speak English—all may experience times when they
are subject to demeaning labels or insults. This can affect not
only patients but also hospital staff who may be the target of
verbal or physical abuse, such as when patients refuse to be
treated by someone of a different race or religion. No one —
patient, caregiver, or staff — should be treated this way. Yet
these incidents do occur because hospitals and ERs are often
places of high emotion, drama, and tension.
What should you do if this happens to you or your family
member? A lot depends on the situation and your tolerance for
bad behavior. Try to distinguish between remarks that are, as best

you can tell, intended to be hurtful, and those that are due to
curiosity or a lack of knowledge. You might be able to stop this by
letting the other person (staff, patient, or patient’s family) know
that you are concerned by their attitude or speech. If this doesn’t
help, ask to speak with the head nurse (assuming that he or she
was not involved), the hospital’s patient advocate, or the director
of nursing. If all else fails, contact the administrator in charge.
Hospital stays are often very short. The offending staff member
may never be seen again or the rude roommate may be
discharged that day. It may not make sense to make a major
complaint at the time, but know that you can do so later. If the
incident affects your family member’s health or causes a lot of
emotional distress, then you may want to pursue the matter right
away.

Discharge Planning


When your family
member is “medically
stable,” he or she is
considered ready for
discharge. This does not
mean that all is well. It
simply means that a
different type of care is
appropriate.

www.nextstepincare.org

Most hospital stays are very short. Therefore, early in the
admission you need to start thinking about what happens after
discharge. Do not wait for the social worker on the unit to find
you. Instead, find the social worker as soon as you can. If you are
an experienced caregiver, you may already know what works best
for you and your family member. You may have had good or bad
experiences with a certain nursing home rehab program or home
care agency. If you are new to being a caregiver, you will have to
quickly learn about discharge options.
If there are ongoing medical issues that need monitoring or there
is a need for physical or cardiac rehab, the recommendation will
likely be a transfer to a skilled nursing facility. Many older LGBT
individuals refuse this recommendation, fearing isolation and
discrimination. Their fears have to be taken seriously. However,
going home may not be realistic, even with home care services.
The social worker may give you a list of discharge options without
making any recommendations. If so, you need to quickly
investigate these options as the time frame can be very short. A
stay in a rehab program may last weeks instead of days, so you
want to try and find a welcoming LGBT environment. Check
nursing home websites for hints that suggest inclusiveness, such
as photos of multicultural patients and staff. Call the admissions
director for the institution’s policies for LGBT patients and staff
training about cultural sensitivity. Your research may reassure

your family member that this is a safe place to be. Of course, the
quality of care and location are also critical factors. Weigh pros
and cons along with what is known and unknown when making
this important choice.
Unpleasant incidents may occur in nursing homes, with remarks
by staff or roommates or other patients. Many patients in these
programs have some form of dementia or are on medications that
may cause them to lose control over their inhibitions. They may
say things that they never would have said if they were not
confused. Still, you and your family member should not be
subject to any disrespect.
 It may be necessary to change roommates.
 If a staff member makes such remarks, tell his or her supervisor.
 If the situation involves the patient’s choice of clothing, gender
appearance, or another characteristic that defines him or her
as LGBT, then the facility’s administration should be informed.
If a longer stay in the nursing home becomes necessary, the
response of the administration to your complaint is a good guide
as to whether this setting will work over time. Every facility must
prominently post telephone numbers for reporting abuse to state
agencies and state ombudsmen (programs that mediate
disputes). Discrimination is abuse and should be reported,
especially if corrective actions are not taken right away.

Home Care
Going home from a hospital or nursing home rehab program is
common. Your family member may resist having “strangers in the
house,” but your own limits as a caregiver may make this
necessary. Choosing an LGBT-friendly home care agency involves
asking similar questions to choosing a nursing home rehab
program. One difference is that with home care you will see just a
few professionals (a nurse and perhaps a physical, occupational,
or speech therapist) and possibly a home care aide. Interactions
are more personal because they take place in the home.
Remember that your family member’s home (and yours, if that is
the case) is your personal space. You should feel comfortable
displaying photos, objects, or books that identify you and your
family member as LGBT. You may have to make adjustments to fit
medical equipment. But you should not have to make
www.nextstepincare.org

adjustments to avoid questions from a nurse, aide, or therapist.
Ask for a change if you are not satisfied with someone’s service or
attitude. It may take a few tries to find the right home health care
team.

Perspectives on Caregiving


Caregiving requires being
an informed, persistent
and, when necessary,
forceful advocate for your
family member.

Caregiving is often seen only as emotional support, which is
essential. But caregiving is more than that. Being present is the
best way to protect your family member’s dignity and rights and
to make sure that his or her care is competent and considerate.
Be prepared for situations that might occur and be flexible when
problems arise. Assure your family member that you will be
present all along the way.
Finally, find support for yourself. This can be from other LGBT
caregivers or friends. It can also be from more general support
groups, such as those for certain diseases. You may find that you
have much in common with non-LGBT caregivers. There can be a
lot you can learn from them. And a lot you can teach other
caregivers as well.

Resources to Learn More
National Resource Center on LGBT Aging:
www.lgbtagingcenter.org
This is the country's first and only resource center aimed at improving the quality of services and
supports offered to lesbian, gay, bisexual and transgender older adults. The website includes links
to information about caregiving, end-of-life decisions, legal support, and other topics. You can
find a map of local resources at www.lgbtagingcenter.org/resources/area.cfm.

SAGE and the National Center for Lesbian Rights’ (NCLR) Planning with Purpose: Legal Basics

Services & Advocacy for GLBT Elders (SAGE) and SAGECAP (Caring and Preparing)
www.sageusa.org
SAGE is the country’s largest and oldest organization dedicated to improving the lives of LGBT
older adults. SAGE provides direct services in the greater New York City area as well as telephonic
assistance to LGBT caregivers nationally to connect them to local resources in their communities.

Lambda Legal’s Take the Power: Tools for Life and Financial Planning
www.lambdalegal.org
also: www.lgbtagingcenter.org/resources/resource.cfm?r=42
Toolkit includes information about creating wills and protecting medical and end-of-life decisions.
The goal is to help create a more secure future for you and your family.

Next Step in Care
www.nextstepincare.org
Free, downloadable, easy-to-use guides and checklists to help support family caregivers and
increase communication between caregivers and health care providers, plus an extensive list of
national, disease-specific and other resources. All caregiver materials are in English, Spanish,
Russian, Chinese.
Family Caregiver Alliance
www.caregiver.org
Materials for all family caregivers, with specific information, discussion groups, and online support
groups for LGBT caregivers.